An Open Letter To Anyone Recently Diagnosed With Hidradenitis Suppurativa

There’s no sugarcoating HS: It’s a tough thing to cope with. That said, there are resources out there that can help. And there are people like me who’ve been dealing with this problem for a decade already who are here to support you. Yes, HS is a skin disease. But it’s also the foundation of a community. Lean on us.

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Dear Fellow HS Warrior,

It is going to be okay. Take a deep breath. You probably just got a lot of information thrown at you and the first thing you want to do is research. But research will probably overwhelm you even more. If you were just diagnosed with Hidradenitis Suppurativa, there are a few things you should know before diving headfirst into an information gathering session.

The good news? You will be okay.

First and foremost, it will be hard. I cannot lie to you about that. The good news? You will be okay.

I have had HS for over ten years now. When I was first diagnosed (after suffering for two straight years with no answers), there was not much information online about the condition. However, that has changed and there are now so many resources and tools to help you.

I would suggest looking for a support group either locally or on social media. This will help when you have questions or are looking for suggestions on things such as bandages. I have learned so much by talking to other people who have HS and have gained so many friends this way too. It is nice to talk to others who know what you are going through.

If you do not feel comfortable with your doctor, get a second opinion.

I would also like to remind you that YOU are your own best advocate. It is important to help yourself as much as possible. There are so many places to turn to and so many people to talk to, but you need to make sure that you do what is best for you above all else.

With HS there is no single solution that applies to everyone who suffers from the condition. If you do not feel comfortable with your doctor, get a second opinion. If you do not feel comfortable with the side effects of a medication, say so. If you feel like something is not right, say something, see the doctor, and get it checked out. I have found in the last ten years that I have gotten the best care in the medical community when I was assertive and used the knowledge I had of my condition to help myself. Do not be afraid to speak up for yourself—you are valuable and deserve the best.

Do not be afraid to talk about your condition.

It is important to know that there will be ups and downs with HS. It is a hard condition but as time goes on there are more and more treatment options and more and more people talking about it overall. Do not be afraid to talk about your condition. I know it seems miserable and embarrassing at times, but the more you advocate for yourself and the more people hear about HS, the less stigma will be attached to it.

Do not feel guilty. You did not do anything to cause this. Remain hopeful because more is being done every day to help people like you and me who have HS.

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